Keep on Dancing

Despite all the surgeries, despite the grim prognoses—despite the odds, really—8-year-old Carmella “Ella” Cruz just keeps dancing.

It’s a dance all her own, more of a life-affirming wiggle than a full-on shake. Her arms flail. She wags her head from side to side. The fact that she celebrates life in this fashion is as much a testament to this brave little girl as it is to the doctors at Children’s Hospital Los Angeles who have helped her over the last eight years.

Ella’s journey with CHLA started back in 2008, when she was 6 months old. She first came to the hospital for open-heart surgery to fix a problem with her pulmonary artery, and for help overcoming tracheal stenosis. As Ella got older, her clubbed foot position—which caused her to walk on the side of her foot—made it more and more difficult for her to walk and even wear shoes. She was eventually treated for her clubfoot, in addition to hip dysplasia, bowel obstruction and more. CHLA physicians now focus on dealing with the effects of Ella’s Moebius syndrome, a condition that hampers a patient’s ability to control the facial muscles and can also affect muscle function and cause limb abnormalities and more. This disorder may have been the cause of many of her previous health issues as well.

“She cannot frown, and because her top lip does not move, she cannot smile like you and I,” says her mother, Jocelyn Cruz. “She might not physically smile, but once you get to know her you will feel her smile light up the room.”

In all, the little girl from Valencia has endured more than 15 surgeries of varying degrees of difficulty. Many of the surgeries have lasted hours. She’s flatlined once. She’s cried countless nights. But Ella simply keeps dancing—for her doctors, for her parents, and for just about anyone who asks.

“I’ve been through a lot, but I’m happy to be me,” she says. “I’m a feisty girl with a mind of my own.”

Ella’s doctors agree. Deirdre Ryan, MD, the surgeon who has worked to cure Ella of her clubfoot and hip dysplasia, says that what stands out to her about Ella is the girl’s indomitable spirit and the ease with which she is willing to trust her doctors.

She adds that no matter what the situation, Ella always has kept a positive attitude about her condition and the surgeries ahead.

“After one of her last clubfoot surgeries she was upset in the moment but when I took her to the cast room, she brightened immediately,” says Ryan. “We let patients pick out their cast colors, and even though she had just endured one of the most trying surgeries of her young life, she was over the moon about being able to pick pink. This is the kind of girl she is.”

Jocelyn credits CHLA with saving her daughter’s life, and notes that none of the other medical facilities the family had been to were willing to do the surgeries that CHLA doctors performed.

The odds certainly were stacked against the Cruz family. Last year, after hip surgery and a bowel obstruction, Ella had to use a ileostomy bag for about three months. In 2008, before one of Ella’s first surgeries at CHLA—the one that was necessary to repair structural problems in her pulmonary artery—CHLA doctors told Jocelyn that Ella’s chance of surviving was about 20 percent.

“We figured 20 percent was better than zero percent,” she confesses. “We just wanted our baby to have a chance.”

Though Ella has endured the toughest part of her treatment, doctors still need to deal with the issues resulting from the Moebius syndrome, and monitor the condition of the clubfoot. Her most recent surgery required the removal of an ear abscess and a sinus closure. As additional surgeries are booked, Ella continues to approach these inevitabilities with poise and grace.

Earlier this summer, Ella said she was planning to celebrate the completion of a procedure with a trip to Legoland California. And at some point, she will.

For now, the Cruz family looks forward to an immediate future that includes less time spent in operating rooms. Sure, there will be other surgeries down the road. And undoubtedly at times those surgeries will test Ella’s fortitude. Yet one can almost picture Ella dancing amid the storm.

How you can help

To help kids like Ella, consider making a donation to Children's Hospital Los Angeles. Visit CHLA.org/Donate.